| Joined: Sep 2019 Posts: 120 Likes: 15 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2019 Posts: 120 Likes: 15 | Hi,I have stage 4 tongue cancer HPV negative does anyone have any percentage survival figures for tobacco related to gue cancer thankyou | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | That's not the sort of information anyone here would have. We're not doctors, just patients or caregivers. And everyone's case is completely different from everyone else's. I can tell you that there are people here who've beaten what appeared to have been unbeatable odds ... and when they give advice, be sure to listen! But the percentages don't matter nearly as much as doing what you and your doctors decide is the best treatment for YOU, and then you taking the very best care of YOU that you possibly can. That will be a highly individualized thing, since we all react differently to treatments, have different complications (or even no complications), and so on.
((hugs)) I saw your other post about having surgery soon. It looks like you've already been reading and getting prepared ... so you're off to a good start!
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Sep 2019 Posts: 120 Likes: 15 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2019 Posts: 120 Likes: 15 | Thankyou kristen,I am so glad to have found this group these posts have helped me get stronger and more prepared I will keep posting my progress after my surgery | | | | Joined: Sep 2019 Posts: 120 Likes: 15 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2019 Posts: 120 Likes: 15 | Thankyou slash for the info | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Overall the 5 year mortality rate for OC is around 50%. This figure has remained fairly steady for the12+ years Ive been a part of OCF. When looking at the numbers/commonly shared stats... one person dying every hour of every day from OC can be very frightening! You can read much more about this sort of thing on the main OCF site in the Understanding section.
Im one of the few who doesnt pay much attention to mortality stats. To me they're a counter-productive Something thats stuck with me for over 10 years is a saying a close friend said. He was a very wise member who passed away several years ago. He would tell members his opinion of mortality stats.... "You will either make it or you wont." Im an example of that saying! When I was given my 3rd OC diagnosis, the odds of my survival were stacked against me being in the teens. I almost refused treatment due to thinking I wouldnt survive anyway. Fortunately, I was able to overcome my 3rd round of OC surprising everyone, especially my doctors.
If you can focus on what is within your control, the entire ordeal will be easier to get thru. Mortality stats are just numbers! They really dont mean too much, they're not anything you have control over. But... you do have control over your ability to follow doctors orders, take in at least your daily minimums of calories and water, keep your pain under control. Those 3 things are what will make the difference in how easily you get thru everything your future holds. No, its NOT easy but it is doable! Especially when you have OCF in your corner to help you with info and support. We've been there and fully understand how frightening it is to face an unknown enemy and whats necessary to eliminate it. Our outlook is different than your medical team. We have endured the ups and downs of battling OC and we share our tips with those just starting out.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2019 Posts: 120 Likes: 15 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Sep 2019 Posts: 120 Likes: 15 | Thankyou christine ,very true when I have all you guys for info and support I don't need stats | | | | Joined: Sep 2018 Posts: 9 Member | Member Joined: Sep 2018 Posts: 9 | I absolutely love the encouragement and common sense approach in this post. Nutrition, hydration, and pain management. Thank you
Diane Walters Van Dyke
| | | | Joined: Jun 2022 Posts: 27 Likes: 1 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2022 Posts: 27 Likes: 1 | Looking at the date on this thread....it's probably a case of better late than never. I too was diagnosed with stage 4 tongue cancer in 2015...however, and thankful...mine was HPV related. According to the Doctor... HPV related cancer is easier to treat...and the survival rate is far higher than other oral cancers. Of course...due my cancer being at stage 4, l wasn't given many treatments options...so they opted for powerful doses of both radiation & chemo which unfortunately left me with brutal side effects which l am still dealing with to this day.. However..l am now 7 years into remission...and happily, still alive to tell the tale. !!! Good luck
KITTY CAT.
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